In October 2014, I noticed a small pea-sized lump on the left side of my cheek. It didn’t hurt, and I didn’t have any physical symptoms that could connect the lump with a rare and serious disease, but I was curious enough about what the lump could be to get it checked out by my primary care physician. My doctor couldn’t determine what the mass was and referred me to an oral surgeon to have it excised and biopsied. During the biopsy, the surgeon reassured me that in 42 years of practice he had diagnosed only one case of cancer. A week later he called and asked me to come to his office. The pathology report showed that the tumor was salivary gland cancer.
Although hearing the words, “You have cancer,” was shocking, I didn’t fully grasp exactly what my diagnosis meant. I still didn’t have any other symptoms of cancer and thought that, if this diagnosis meant I would have occasional recurrences of these tiny oral tumors and they could easily be removed, then it wouldn’t be so bad. I had no idea of the serious challenge I would soon be facing.
My surgical oncologist removed additional tissue from my left cheek to test for any remaining malignant cells and recommended 7 weeks of high-dose radiation therapy to prevent the tumor from recurring. But even as I was undergoing treatment, more tumors were popping up in my left cheek. Still, I didn’t think this was a serious development. I had another surgery to remove the new tumors and then another when tumors cropped up in my right check. But the surgeries couldn’t keep pace with the cancer. Over the course of that first year, I underwent four surgeries, and still the cancer kept coming.
Living in Denial
Although, during this time, I continued to feel well and remained convinced that my health situation wasn’t dire, I decided to travel from my home in Oklahoma City to The University of Texas MD Anderson Cancer Center in Houston for a consultation. The oncologist there recommended continuation of the treatment I had had in Oklahoma: more surgeries as tumors popped up in my cheeks and now my chest, followed by additional rounds of high-dose radiation therapy to my head and neck.
However, the treatments failed to stop the steady and fast progression of the disease. Full-body computed tomography (CT) scans found showed the cancer had spread throughout my lymphatic system, and tumors were now in my lungs, liver, and kidneys. I had so many tumors, my oncologist couldn’t keep count. When he told me that surgery and radiation were no longer viable treatment options for me and recommended I see a medical oncologist to discuss chemotherapy remedies, I was in shock.
Even though my body was riddled with cancer, I wasn’t feeling its effects. I was still going to the gym most days and running 2 miles on the treadmill. I never experienced shortness of breath or any other symptom that explained what I was about to hear.
Getting My Life Back
When I met with the medical oncologist, she told me that the cancer was growing so fast—the tumors throughout my body had doubled in size in just 5 days—chemotherapy was unlikely to stop progression of the disease. At best, she said, the treatment would keep me alive for another 3 to 4 weeks. Her words were shattering. It never occurred to me that I could die of salivary gland cancer, and now I was facing death in a matter of weeks.
Then the oncologist said she had been looking through my pathology reports and noticed that the cancer had a neurotrophic receptor tyrosine kinase (NTRK)-gene fusion and that MD Anderson had just launched a clinical trial investigating larotrectinib, a small-molecule, highly selective, tropomyosin receptor kinase inhibitor that was being tested in patients with various solid tumors with an NTRK-gene fusion without a known acquired resistance mutation.
Rather than take my chances with chemotherapy, I enrolled in the clinical trial, and, within days, I could feel the tumors melting away. Four weeks later, a full-body CT scan showed that all the tumors were gone except for one in my lung, and it had shrunk in size by 65%.
Today, I’m still receiving larotrectinib through the clinical study, and there are no signs of any malignant tumors in my body. Although my oncologist cannot pronounce me cancer-free, she believes I’ll remain in remission as long as I continue to take larotrectinib.
[Editor’s Note: In 2018, the U.S. Food and Drug Administration [FDA] granted accelerated approval to larotrectinib for the treatment of adult and pediatric patients with solid tumors that have an NTRK-gene fusion without a known acquired resistance mutation that are either metastatic or where surgical resection is likely to result in severe morbidity and who have no satisfactory alternative treatments or whose cancer has progressed following treatment. Larotrectinib is the second tissue-agnostic drug the FDA has approved for the treatment of cancer.]
Finding a New Life Purpose
I’m a lawyer by profession, but my new mission in life is to spread the word about the importance of genomic sequencing in oncology care. Without this testing, I’m sure I would not be alive today. I don’t know why the discovery of NTRK fusion–positive cancer came so late in my treatment. If it had been known earlier in my diagnosis, I may have been spared the many surgeries to my head and chest and the late effects to my teeth and jaw from the radiation therapy.
It is my hope that, through my advocacy efforts, more physicians and patients will become aware of the benefits of cancer genomic sequencing and that it will become a routine part of tests performed on newly diagnosed patients to give them the best shot at a cure or at least a longer, high-quality life.
After coming so close to death, I don’t take any day for granted, and, today, I’m living my best life. It is my hope that every patient with cancer can have that same experience.
Mr. Taggart practices law and lives in Oklahoma City.
Editor’s Note: Columns in The Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.